By Abbey Haigh, 21
My problems all started just after I’d hit puberty, I was about 13 when I got my first urinary tract infection. In the beginning drinking lots of water and bearing the pain for a few days meant it would clear up for a while but over time the symptoms and the pain got worse.
Once I became sexually active I started to discover other problems for instance; pain and bleeding during and after intercourse and heavy periods. After many internal examinations, scans and ultrasounds and a lot of waiting time in between, I was diagnosed with Uterus Didelphys which means that I have two uteri, two cervix’s and one vagina with a septum which has now been surgically removed. Because of this discovery, investigations into the problems that I was having with recurrent urinary tract infections were side tracked and the doctors focused on removing the septum to eliminate as much discomfort during intercourse as possible.
I continued to get Urinary tract infections frequently and was prescribed one course of antibiotics after another, a lot of the time the doctor didn’t even ask for a urine sample as they could see I was in pain and having the exact same pain and discomfort as before. Sometimes when I did have urine samples sent to the lab however, the results showed that I had an increase of both white and red blood cells but no bacteria present. So my body was acting as if it was fighting a bacterial infection, even if there wasn’t one present. I did a lot of research by myself and was constantly suggesting to GP’s that I was sure I suffered with interstitial cystitis/ painful bladder syndrome but it is only recently at the age of 21 that a new doctor actually listened to me and referred me to a urologist who confirmed my suspicions with a cystoscopy, bladder distension and biopsies.
Since the cystoscopy I have suffered a huge flare up and the pain has been almost unbearable. I usually find that the pain is uncontrollable during a flare up, only subsiding after days of waiting and tolerating it as best I can, drinking plenty of water, taking a cocktail of painkillers and being very careful with my diet. I have gradually eliminated dairy, caffeine, sugary snacks, tomatoes and spicy foods. I only drink water and up until recently decaffeinated tea but I have cut that out too. During the night if I don’t wake up in time from a deep dream, there can be an accident and during the day if I can’t reach the toilet in time, which is why if I am out I always make sure I am within walking distance of a loo!
I have had to quit my job which has meant that I have no money coming in and it has left my partner to pay the rent and bills by himself on top of everything else. It has caused me to have depression in the past and more recently, since the problem seems to be a lot worse I have considered ending my own life because I don’t see a future without constant pain and discomfort. I am now taking Amitriptyline, Vesacare, Nefopam, Naproxen and Senna as well as Ibuprofen and Paracetamol. The drugs make me drowsy, nauseous, and dizzy and overall turn me into a zombie. Because of my excessive use of antibiotics I am now allergic to trimethoprim and find other antibiotics ineffective. I am looking into alternative medicine to offer me some sort of relief but I am certain that this is really no way for anyone to live.
I was hoping to start university in September as I have been offered a place to study Mental Health nursing but of course it is conditional and I am now doubtful that I will pass the medical assessment. I have no sex life, no social life, no work life and no income because my condition doesn’t even allow me to be entitled to any financial help in terms of benefits as it is not recognised as a disability, even though it has disabled me from my whole life.
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